Extreme fatigue after following a gluten free diet- taking modafinil (vilafinil) to stay awake

[victoriayatesxo]

Does anyone else relate to me? I just have celiac disease, I was diagnosed about 3 years ago and follow a strict gluten free diet. I only have a mild case but still find it impossible to stay awake normally. It started to affect my postgraduate degree and no number of coffees would help so I've started taking vilafinil. Is it common for other celiac sufferers to use modafinil?

[Scott Adams]

Although your symptoms if you eat any gluten may be mild, all the negative heath consequences if you to eat any gluten are still the same, so hopefully you fully avoid it.

It sound like you could have vitamin and mineral deficiencies that often come with celiac disease. Are you taking a good vitamin and mineral supplement that includes a B- complex, along with vitamin D?

[victoriayatesxo]

Hi yes, I take multivitanims every day as well as iron supplements but still really struggle with sleep

[Scott Adams]

I've not heard of either prescriptions as being common for celiacs, and it looks like vilafinil keeps you awake and alert, and modafinil has similar properties. The side effects of taking these can definitely cause sleep issues. Have you tried melatonin to help you sleep? It is a natural hormone widely available here in the USA, and is considered non-habit forming and used to help you fall asleep, and sleep better. 

Likewise, it might be better to try to switch to something more natural to keep you awake, for example green tea.

[victoriayatesxo]

12 hours ago, Scott Adams said:

I've not heard of either prescriptions as being common for celiacs, and it looks like vilafinil keeps you awake and alert, and modafinil has similar properties. The side effects of taking these can definitely cause sleep issues. Have you tried melatonin to help you sleep? It is a natural hormone widely available here in the USA, and is considered non-habit forming and used to help you fall asleep, and sleep better. 

Likewise, it might be better to try to switch to something more natural to keep you awake, for example green tea.

Yeah, I tried all the teas and coffees to help me stay awake but none were strong enough and I could still fall asleep whenever. One day I slept for 23 hours straight and then woke up still feeling tired. The problem is never actually getting to sleep.

[knitty kitty]

@victoriayatesxo,

Welcome to the forum! 

Have you been checked for all types of anemia?  Anemia can cause fatigue and somnolence.  I've slept through ambulances, fire trucks, tornado sirens, etc. when I've been anemic.  

The medication you mentioned is prescribed to people with ADHD and people with ADHD can benefit from taking extra thiamine.  

https://www.hormonesmatter.com/?s=Narcolepsy

Adding extra thiamine helped me focus and concentrate without falling asleep.  

Have you tried a low histamine diet like the Autoimmune Protocol Diet? 

High histamine levels would make me very sleepy.  

Have you tried tryptophan?  Tryptophan is used to make the brain neurotransmitters that regulate sleep.  Tryptophan helped regulate my sleep cycle.  

These are things that helped me.  Celiac Disease damages the small intestine where vitamins are usually absorbed.  Correcting insufficiencies in vitamins and minerals can help our bodies heal and function properly.  Blood tests for deficiencies don't reflect vitamin deficiencies inside organs and tissues where they are utilized.  The gluten free diet can be deficient in some nutrients.  Gluten free facsimile foods are rarely fortified with vitamins and minerals like their gluten containing counterparts.  Supplementing with a B Complex vitamin in addition to the multivitamin might be beneficial. Discuss this with your doctor.

Hope this helps! 

 

[victoriayatesxo]

1 hour ago, knitty kitty said:

@victoriayatesxo,

Welcome to the forum! 

Have you been checked for all types of anemia?  Anemia can cause fatigue and somnolence.  I've slept through ambulances, fire trucks, tornado sirens, etc. when I've been anemic.  

The medication you mentioned is prescribed to people with ADHD and people with ADHD can benefit from taking extra thiamine.  

https://www.hormonesmatter.com/?s=Narcolepsy

Adding extra thiamine helped me focus and concentrate without falling asleep.  

Have you tried a low histamine diet like the Autoimmune Protocol Diet? 

High histamine levels would make me very sleepy.  

Have you tried tryptophan?  Tryptophan is used to make the brain neurotransmitters that regulate sleep.  Tryptophan helped regulate my sleep cycle.  

These are things that helped me.  Celiac Disease damages the small intestine where vitamins are usually absorbed.  Correcting insufficiencies in vitamins and minerals can help our bodies heal and function properly.  Blood tests for deficiencies don't reflect vitamin deficiencies inside organs and tissues where they are utilized.  The gluten free diet can be deficient in some nutrients.  Gluten free facsimile foods are rarely fortified with vitamins and minerals like their gluten containing counterparts.  Supplementing with a B Complex vitamin in addition to the multivitamin might be beneficial. Discuss this with your doctor.

Hope this helps! 

 

Thank you so much. I take multivitamin and iron supplements- I'm not anemic although my iron levels were at the lowest number in the normal category. I'll have a read of this info.

[Wheatwacked]

On 4/9/2022 at 2:31 PM, victoriayatesxo said:

no number of coffees would help

I drink coffee as a sleep aide. And SSRi's make me twitchy. I was put on coffee by the pediatrition when I was 11 years old (pre Ritalin days) a cup before school and a cup at bedtime.

[Scott Adams]

3 hours ago, victoriayatesxo said:

Thank you so much. I take multivitamin and iron supplements- I'm not anemic although my iron levels were at the lowest number in the normal category. I'll have a read of this info.

There are different types of anemia, for example pernicious anemia, and some can only be detected by very specific tests. It might be worth it to go through these in more detail, then bring up your issues with your doctor for possible screening:

https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360 

[michyaz]

8 hours ago, victoriayatesxo said:

Yeah, I tried all the teas and coffees to help me stay awake but none were strong enough and I could still fall asleep whenever. One day I slept for 23 hours straight and then woke up still feeling tired. The problem is never actually getting to sleep.

Have you had a sleep study? It could be unrelated to your Celiac?

[victoriayatesxo]

On 4/11/2022 at 7:33 PM, michyaz said:

Have you had a sleep study? It could be unrelated to your Celiac?

Yeah, I don't think it's a sleeping condition because when I'm out of the house on a day out or out at night, I never usually struggle it's just when I'm in. I have been referred to the sleep clinic though

On 4/11/2022 at 5:40 PM, Scott Adams said:

There are different types of anemia, for example pernicious anemia, and some can only be detected by very specific tests. It might be worth it to go through these in more detail, then bring up your issues with your doctor for possible screening:

https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360 

Thank you for raising this, I'll have a look.

[Scott Adams]

I agree with proceeding with the sleep study, I was diagnosed with sleep apnea a few years ago, and after using a cpap ever since I have much more energy during the day.

[victoriayatesxo]

1 hour ago, Scott Adams said:

I agree with proceeding with the sleep study, I was diagnosed with sleep apnea a few years ago, and after using a cpap ever since I have much more energy during the day.

Thank you, I'll take your advice and follow through with the sleep referral

[knitty kitty]

@victoriayatesxo,

What are the ingredients of your multivitamin and iron supplements?  

What do you include in your strict gluten free diet?